CFS Patient Advocate

Patient Advocate

The job of Patient Advocate came upon me uninvited. I did not apply for this job, nor did I have any qualifications for it. I am a sculptor, not a doctor or a researcher. My daughter became sick with a mysterious fatigue illness and I was the obvious person to fill the job. Learning the job of a PA unfolds over time and there is no instruction manual. Certain ideas and thoughts can be transferred from former jobs and former lives, but much has to be learned from scratch. It is helpful in doing the PA job if you have a lot of time and a lot of money, as the solution to this disease takes a great deal of both. It would also be helpful to have an education in bio-chemistry, of which I have none. The most important qualification that a Patient Advocate needs is persistence and discipline. A PA also needs to remain objective and detached, even under the most extreme conditions. Every Patient Advocate has a patient. My patient is my daughter. The objective of this particular Patient Advocate is to make his daughter better. How to set about it is another matter, and turns out to be a complex and sustained set of illusive problems. While most doctors look at a broad and confusing set of symptoms and try to attach treatments to an entire cohort of partially differentiated patients, the PA’s problem is slightly different. The Patient Advocate, by job definition, is obliged to help one person - in this case, his daughter - his patient. Thus the PA is looking at one narrow and confusing set of symptoms, which makes his problem slightly easier.

Christopher Cairns

About Me

I am the patient advocate of my 40-year-old daughter. She is housebound in St. Paul MN with CFS/ME. This blog presents reports from several lectures or conferences. It also attempts to define, in my own way, the role of a Patient Advocate. The premise is simple. I make my observations in hopes that they might be beneficial to others, in the same spirit of generosity that so many others' comments have been useful to me. These entries are presented for information only purposes. In no way should they be taken as medical advice. I am not a doctor and I do not want to be one.

Followers

Friday, February 27, 2015

"unequivocal evidence of immunological dysfunction in ME/CFS and diagnostic biomarkers for disease."Dr. Mady Hornig and Dr. Ian Lipkin from Columbia University published an important paper today in Science Advances. The study can be read here. Articles on this cytokine study appeared immediately in theWall Street Journal and the NY Times, written by Amy Marcus and by David Tuller. Both of these journalist have been on top of reporting on this disease for a number of years and their efforts are commendable. This significant study at Columbia (financed by the Hutchins Family Foundation) - along with the brain imaging of Dr. Jose Montoya at Stanford - will go a long way towards shifting the momentum in research into this serious illness - ME/CFS, otherwise known as Myalgic Encephalomyelitis.From the Columbia website: We now have evidence confirming what millions of people with this disease already know, that ME/CFS isn't psychological,” states lead author Mady Hornig, MD, director of translational research at the Center for Infection and Immunity and associate professor of Epidemiology at Columbia’s Mailman School. “Our results should accelerate the process of establishing the diagnosis after individuals first fall ill as well as discovery of new treatment strategies focusing on these early blood markers." "This study delivers what has eluded us for so long:unequivocal evidence of immunological dysfunction in ME/CFS and diagnostic biomarkers for disease,” says senior author W. Ian Lipkin, MD, also the John Snow Professor of Epidemiology at Columbia’s Mailman School. “The question we are trying to address in a parallel microbiome project is what triggers this dysfunction."Dr. Hornig will give a presentation on the research at Columbia at the Invest in ME conference in London at the end of May.

Friday, February 6, 2015

I had the privilege of meeting Hugh and Chris Hempel at the Whittemore Peterson Institute in 2009. My son Peter Cairns was filming various individuals with neuroimmune illness, among them the Hempels. The Hemples' two daughters Addi and Cassi, now eleven years old, have Neimann-Pick Disease, a rare and fatal illness.

The Hempels are what every parent of a chronically ill patient aspires to be. Few achieve the level of involvement and focus that they achieve. They have set aside totally their own lives and devoted themselves to the betterment of their two ill daughters. I have followed what they have done over the last number of years with astonishment.

Today I came upon this video unexpectedly. I was surprised to hear Mr. Hempel speak on a subject that is of very great interest to me. Medical cannabis is in the news every day now. There is a great battle going on in America. The outcome is uncertain. The great states of Minnesota and Pennsylvania, two states close to my heart, are moving towards medical marijuana programs. Why does it take so long?

It is painfully obvious that cannabis, especially non-psychoactive CBD or THCa, has certain medicinal properties and has helped, in various non-smoking forms - oils, tinctures, vaped, transdermal, suppositories - a great many chronically ill people, including the two daughters of the Hempels.

Mr. Hempel is doing us all a great favor in presenting his experience at a Ted talk. It also takes a bit of courage, given the nature of the US Government's position regarding medical marijuana. Mr. Hempel lays out the picture, without making extreme claims, only asking for serious research into the potential of this medicinal plant.

There seems to be some use of medical marijuana in Lyme patients. Not much anecdotal experience in ME/CFS is available on the internet. Given CBD's known anti-inflammatory properties, one would wonder, why is this?

Wednesday, December 31, 2014

It is that time of year again.
Holiday time and the New Year is the saddest season for ME/CFS patients. While
the dance of life goes on for many people, ME/CFS patients feel the heightened
sense of abandonment and despair.

We need to try to do more to
relieve their suffering.

I have felt for a long time that
the key to the illness – should there be a key – lies with the severely ill.
These patients at ground zero of this illness need to be studied - and studied
in depth.

This is more possible today than
any time prior. There are commercially available tests that could uniformly be
applied to this patient group. I could list some of them, but I will forgo this at this time. And then there are the research tests that would
delve even deeper.

Please excuse the repetition as I
quote a few items from my previous blog posts.As Stravinsky said, some things need repeating.

“It is my belief that we,
collectively, have to look more closely at the most severely ill ME patients.
It is my belief that they harbor, in their severity, the keys to this illness.
Most doctors do not see the most severely ill. Dr. Kenny De Meirleir, in his trips
into Norwegian homes, treats the very ill. Dr. Paul Cheney and Dr. David Bell also have
occasionally seen the severely ill. Perhaps others have - and hats off to them.

But, by and large, the severe patient is isolated from everyone. The severely ill ME patients cannot get
to a doctor's office. They languish in darkened rooms, cut off from reality,
isolated and often abandoned, and without medical care. It appears that no one
cares a whit about them. It is these patients on whom we have to focus our
attention - both for their sake and for ours. More effort has to be made to
"get in close," although this, in itself, is difficult under even
the best of circumstances.

I know of a number of these
patients. They have the willingness to participate, through testing, in
their own potential betterment - provided that the severity of their situation is taken
into consideration. Many already have had testing for immune function, NK cell activity,
cytokine disregulation, gut dysbiosis, brain scans and so forth. Consistent
testing needs to be applied to these patients using existing parameters - if
only to set the stage for future possibilities that will soon arise.

Most people do not want to take a
look in this direction. Most people turn away - including doctors. It is time
to toughen up - and to consider these patients, and what they are going
through. Testing of the moderately ill has not brought clarity.
We need to brace up, take a good look and then move in close. While it is
difficult it is the only decent and humane thing to do.”

“Until those at the center of this
illness - those in darkened rooms - are depicted, embraced and understood,
nothing will happen at the government level.

In order to set the tone, videos of
severely ill patients should be presented at the beginning of any government or
private conference on ME/CFS. Voices from the Shadows, Josh Biggs' and Natalie Boulton's very fine film (or
similar videos), should be mandatory - to set the stage and to get the
participants in the right frame of mind.

There is clear evidence that the
government has no interest in this. Multiple times they have been given the
opportunity to present visual evidence of the severity of the illness, and they
have said no. The government is content to give a grieving altar to the
moderately ill and leave it at that.

The very, very ill have big problems.
Everything around them represents a threat to their health. They need to be
protected at every level – protected from doctors, from roofers, from plumbers,
from realtors, from neighbors, from movement, from noise and vibration, from
friends, from family, from hospitals, from water, air, chemicals, mold – from
everything.”

“And what about the others - what
about the really sick ones?

There is really only one way to
present this illness, and it needs to be done more often. The face of this
illness lies in the presentation of the severely ill patients. This is one of
the real values of Laurel's CFSAC video testimony in October 2009. She did us a very great favor to
make this video, visually and audibly describing her condition. This courageous
and heartrending video that has so much power and dignity. We need to see more
of these kinds of videos - images and pictures of the severely disabled. This
is where the visual information lies - down near the bottom.

"Walled up:

Imagine a patient who cannot stand,
who has extreme fatigue and must live a horizontal life. Imagine a person who
is functionally blind from light sensitivity and eye muscle fatigue and wears a
blinder 24/7. Imagine how this blindness might further limit this person's
ability to move. Imagine this person with sound sensitivity so bad that they cannot tolerate the phone ringing or dogs barking outside. Imagine a person whose skin
is sore and sensitive to the touch. Imagine a person who cannot focus their
thoughts, has short term memory deficit, or can't speak clearly because of
neurological deficits ("brain fog"). Imagine a person who has seizures,
spasms and twitches. Imagine a person who has lost their sense of smell - or
has hypersensitivity to smells. Imagine a person who cannot speak, or cannot
speak above a whisper. Imagine a person with a feeding tube, IV medication, and
oxygen. Imagine living in a world where things coming in and things going out
don't happen. Take a good look. This is ME/CFS at the core. My friends in the
UK call it ME. It is worth noting that all ME/CFS patients are on a continuum,
shifting whimsically up or down the scale over the years.”

Incidentally these severe patients
have measurable abnormalities that characterize the illness.

I have written about the film
Voices from the Shadows here. Allow me to quote one part of this

review.

“And yet the
film does focus on "those who do not back away" - the caregivers.
These caregivers are trying valiantly to save their loved ones, but the stress
is in their eyes, in their movements. It is a very difficult position to be in,
to chose to move in close and
support the very ill patient. Moments of interchange between the caregiver and
patient are excruciatingly poignant and painful. This illness is terrible for
the patients. It robs them of much of life's normal activities and interaction,
and yet the caregiver, in his or her giving, suffers terribly also - and this
film delivers that message. A properly balanced interaction between caregiver
and patient - something that is extremely difficult to get right - is depicted
with extraordinary sensitivity by these filmmakers.’

"Natalie Boulton has also done us a
great favor in writing and editing her fine book, Lost Voices, a
gathering or set of stories and pictures of severely ill UK ME patients. The
book was published by InvestinME in 2008. It gives the clearest picture currently available of
this illness, and is the most valuable resource for coming to terms with its
reality. Otherwise there are various videos on youtube made by patients, and by
the providers of these very sick patients. Many of the older videos that I viewed
years ago - ones that were quite frightening to me - have disappeared off the
internet. Soon we will have additional contributions in this area, and they
will be welcomed for what they are - clear documents of the core of this ME/CFS
illness.

This, of course, is not an easy
subject. It is a delicate issue - this severe private illness that takes place
in darkened rooms - and from many points of view. But I think we have to have
the courage to put pictures and videos - with clear explanations - out into the
world in order to show the serious consequences of this illness. This illness
needs a face, a real face.

I was in the conference hall in
London several years back when Dr. Kenny de Meirleir showed videos of
desperately ill, bed bound patients in Norway. The video was extreme, showing a
patient lying in a bed in a darkened room, with a feeding tube, wearing a
blinder and ear protectors. The sheets were suspended above the patient due to
intolerance of the weight and pain of the sheets. It was a riveting, terrifying
video, an image straight out of Dante. At the same time, Dr. de Meirleir had a
young woman speak about her "walled up" sister, who she had not seen
in four years - even though they lived in the same house. It was easy to sense
that this presentation shocked the audience, an audience consisting of patients
or those familiar with the illness. It was as if Dr. de Meirleir had done
something inappropriate. But for me, it was a revelation, and that moment has
percolated in my mind ever since.

How can this illness be presented
to the uninformed - doctors, researchers, journalists, friends and families -
in a profound way? I think you have to go "to the core". It is like
going inside of the smashed nuclear reactor and viewing the exposed fuel rods.

Certainly, at the moment, the face
of this illness has not registered with the public at large, and listing a long
list of symptoms is not going to cut it. I want a video in my hand that depicts
the "very bottom" - a video that I can hand to Dr. Harvey Alter and
say : "Dr. Alter, take a look at this." - and hand it to any number
of people with the same intention. There is a need to provoke people into the
recognition of the true devastation that this illness inflicts on patients -
and caregivers.”

Such were some of my comments from
the past. If I ever had a conspicuous idea about this illness it is to study
the severity of it. Hopefully things are about to change in this regard and I
will write more about this soon.

In the meantime, I have five or six
ME/CFS friends who have made substantial improvement in the last few years.
Most had the illness at a moderate to serious level and were disabled in one
way or another, suffering serious consequences to their lives. Each of them
pursued various avenues to betterment and there was no commonality to what
brought them to some betterment - and a couple to substantial betterment. No commonality, and yet they have the same
illness. Their diverse treatments included antibiotics, acupuncture, Valtrex,
methylation supplements, uv light therapy, thyroid regulation, dietary changes, Chinese herbs, jin shin jyutsu, ozone therapy - and cannabis.Each had to find their own path through trial and error. This is an important bit of information.

Thursday, October 16, 2014

ILADS is a professional scientific conference
focusing on the education and treatment of Lyme disease and its
co-infections. This year's conference in Washington DC was packed.

I was particularly pleased to see Dr. Neil Nathan
from Gordon Medical Associates give several lectures, one on viral treatment
for the Lyme patient and one on methylation. Dr. Nathan is a remarkable
clinician, one who is open to suggestion regarding different treatment
modalities. Dr. Nathan, Dr. Eric Gordon and Dr. Wayne Anderson form a unique
group of physicians working on these complex illnesses out of one clinic, Gordon Medical
Associates in Santa Rosa, CA.

I really went to ILADS to hear Dr.
Joseph Brewer update us on his treatment for Mycotoxins in ME/CFS and Lyme. The bottom line of Dr. Brewer’s lecture was that this
treatment is continuing to provide remarkable results. Over time Dr. Brewer
has gained confidence that he is really onto something here. Many others are
beginning also to understand and treat patients for mold and mycotoxin involvement.

A previous blog post from October 2013 covered Dr.
Brewers previous Mycotoxins lecture at ILADS. It can be found here.

Once again Dr. Brewer gave a quick review of the
overall picture of mycotoxins and chronic illness. Dr. Brewer pointed out
that mycotoxins suppress all aspects of the immune system. Certainly this is
what Shoemaker and others have found.

Dr. Brewer continues to use Ampho B in an atomized
nasal application. Ampho B has caused serious nasal irritation in some
patients. These patients either cut back their treatment or shift to another
treatment drug.

Dr. Brewer presented a pilot study, done with his
own patients. This is an open label observational study done by him and his patients. This pilot study covered treatment of 151 patients between
May 2013 and May 2014. The treatment for all patients was two fold: nasal
atomized Ampho B and nasal atomized PX chelating formula. Chelating PX is a
combination of EDTA and a surfactant. Each patient did each agent once daily
for at least six months. A few were every other day dosage.

56 patients dropped out, not able to tolerate Ampho B.

94 of 151 continued on the study.

Of those 94, 88 showed improvement at the end of
the study. This is a 93.7% improvement rate. Improvement was 25-50% or greater from baseline, and this was self-reported.

One third of the 88 are pretty much back to normal. These patients have had a complete resolution of symptoms.

58% of the total 151 improved with this
treatment.

Die off was reported at 13%. Dr. Brewer believes
the die off percentage was higher, perhaps in range of 30-40%.

22 patients continue to be
followed. Some of these have stopped treatment while others were on
maintenance doses. A number of patients have relapsed after stopping
treatment.

A few patients, more recently, have stayed off treatment and
have not regressed. It is believed that the treatment has to be continued for a
certain unspecified duration for complete resolution.

Since April 2014, Dr. Brewer has begun using nasal
Nystatin on a number of his newer patients. He has now treated 80 patients with
Nystatin. Most of them were in the Ampho B intolerant group. ASL
pharmacy has been unsuccessful in making a liquid formulation of
Nystatin for atomization. Instead they fashioned it in a pill form. The pill is
opened and the powdered Nystatin is mixed with distilled water prior to being
atomized with the Nasa-Touch. The patients on Nystatin have no nasal
symptoms. It seems to be very user friendly on the nose. Die off is about the same as with Ampho B cohort. Preliminary results indicate that these patients are improving on nasal Nystatin treatment.

There may be other agents that could be useful and they will be studied.

This report is for informational and educational purposes only. It is
not to be seen as medical advice in any way.

Tuesday, July 29, 2014

The following is an update on mitochondria and mitochondria testing in ME/CFS, a kind of overview as I see it. None of the following has to do with "Science", say, as practiced by Dr. Lipkin. Instead it fits more into the category of what Dr. Shoemaker would call "desperation medicine". I prefer myself to call it 19th century medicine, epitomized by this: "here, try this".

I do not pretend to be interested in science - especially relative to ME/CFS. However, real science activity in other areas - the immune system for instance, or gut ecology - is of great interest to me. I absolutely believe that something helpful will "slop over" into "my illness area" from other illnesses. This is my view and I work accordingly, trying to calculate the odds of any particular treatment, knowing that all treatments are experimental ("non-scientific") - and a potential threat. No one can convince me though that "my chronic illness" does not involve mitochondrial dysfunction.

Dr. John McLaren-Howard started Biolab in London many years ago. He has always been a real hero to me. When he retired, he formed the small lab Acumen lab in Cornwall UK. (I have always imagined Acumen to be in Dr. Howard's basement - or garage.) Dr. Howard has continued doing various tests that he began at Biolab. Principal among these is a mitochondrial profile test (examples are at the end of this post). Dr Sarah Myhill discusses the mitochondrial profile test here. Dr. McLaren-Howard offers other mitochondrial tests - translocator protein, DNA adducts, cell-free DNA, Cardiolipin studies in mitochondrial membrane, blood metallothionein studies, and toxic effects studies. All these tests give insight into the working of the mitochondria.

Dr. Howard has worked with Norman Booth and Sarah Myhill and published various papers on his mitochondrial testing, as it relates to ME/CFS patients. A 2009 paper can be found here. Here is another important paper from 2012.

I wrote about this mitochondrial test in 2011 in another post on this blog, and also here a year later.

For a fee, Dr. Myhill will write an analysis on the test result and suggest various treatments. The treatments that she suggests to increase mitochondrial function are well known and can be found here and roughly parallel what in the larger world of mitochondrial illness is known as the "mitochondria cocktail". This includes co-Q10, acetyl-l-carnitine, d-ribose, NAD, creatine, and magnesium. I think it is fair to say that great weight is put on magnesium.

Often magnesium is found to be low in ME/CFS patients and this is one element that Dr. Myhill says can be corrected through sub-Q magnesium injections. (I would appreciate hearing a conversation between Myhil and Cheney on this subject.) Tests at Quest or Biolab can be done on coQ-10. Status of blood levels of carnitine and NAD are part of the basic Acumen test. The basic test covers ATP profile, SOD, Cell free DNA, NAD blood levels, and Carnitine blood levels.

Anecdotally, various items can be altered with supplements. Blood levels of coQ10, carnitine and NAD can be improved. What this means clinically is another matter.

A third paper of the collaboration, emphasizing treatment, can be found here. It indicates that a majority of patients improve with supplemental treatment. I myself have found that the test can be normalized with aggressive treatment. In the third paper published by Myhill et al, patient betterment was achieved, indicating clearly, as in my case, that mitochondrial normalization (via this test) is helpful.

Dr. Paul Cheney might take a slightly different view of the matter of mitochondrial treatment. He might express that "front-door" treatment of the low measurements of carnitine and co-Q10 is ineffective, and indeed perhaps counterproductive. Dr. Cheney believes that mitochondrial dysfunction in ME/CSF is a self-protective down-regulation and has to be dealt with carefully. This is a fantastic idea and certainly possible. Dr. Robert Naviaux holds similar views with his "playing dead" thesis.

Dr. Cheney himself would perhaps treat mitochondria with high- dose hydroxocobalamin B12, frequent S/Q magnesium injections, transdermal creams or sprays. It is his belief that magnesium in these patients is constantly leaking out of the mitochondria and needs constant replacement. Dr. Cheney might also suggest Isoprinosine (Inosine) and Klonopin. Mitochondria have a klonopin receptor.

Dr. McClaren-Howard and Dr. Derrick Lonsdale, now retired, would suggest thiamine injections or supplementation with an active form of thiamine, as found at Our Kids. Dr. McLaren-Howard would suggest that thiamine is necessary to get magnesium into mitochondria. A transketolase test can be done at King James lab to determine active thiamine levels and the presence or not of a blocking enzyme. This is not an unimportant detail. (Actually King James lab has closed now. Life goes on.)

Dr Joseph Brewer tested PQQ on a number of his patients several years ago, looking to increase mitochondrial function. He also told me about Dr. Richard Boles, who is medical director at Courtagen Life Sciences, a mitochondrial research company. This is another level of mitochondrial research testing and perhaps the wave of the future. Current prices for testing put it far out of reach.

Terry Wahls
And then there is Terry Wahls. I first wrote about Terry Wahls in 2009 on this post. Dr. Wahls recently published a book on her mitochondrial diet, which is a great elaboration of her first book, Minding My Mitochondria. Various ME/CFS patients gain physical strength in taking on her diet, including daily bone broth, seaweed, and fermented foods. Again there is very little that one would call science here and the treatment improvement is only part of the larger picture.LRT - lipid replacement therapy

The recent ME/CFS conference in SF featured a poster paper of Dr. Garth Nicholson on lipid therapy for mitochondria. Dr. Nicholson has been working in this area for some years. It was interesting to see Dr. Nicholson and Dr. Cheney discussing Dr. Nicholson's poster paper. Here is a recent article on Garth Nicholson's ideas about LRT - or lipid replacement therapy. Dr. Nicholson has made presentations at various conferences promoting his research and treatment into phosphytidyl lipids, especially NT factor. Dr. Nicholson was certainly telling Dr. Cheney how effective NT factor was - and that it really did get into the cell membrane for repair.

Differing with this and giving a second argument would be Patricia and Ed Kane, both of whom have long advocated a separate phosphytidyl lipid treatment, mostly involving IV infusion. This treatment involves their proprietary phosphytidylcholine (PC), sold at bodybio. More recently they have moved into liposomal or microsomal phosphytidylcholine treatment, which proves to be effective. Here is a video of Ed Kane speaking on phosphatidylcholine therapy. It is a winner.

All of the above are different approaches to "feeding the mitochondria" - and improving the function and the number of mitochondria.

Nicotinamide Riboside

Recently I received the heads-up from my friend Nancy Rouch about a mitochondrial lecture by Dr. Robert Rountree, chief medical officer of Thorne products. While this is one long advertisement for various mitochondrial supplements, it does present interesting information. (This lecture will be available for viewing until the end of July.) Dr Rountree suggests the "usual suspects" - or "foods" - for mitochondria - magnesium, co-Q10, acytel-l-carnitine, creatine. He also adds these items: sulforaphan, green tea polyphenals, berberine, quercetin, cucurmin, resveratrol, pterostilbene, melatonin, NAC, and ketogenic amino acids. He spends a significant amount of time on NR - nicotinamide riboside, a precusor to NAD. What he says about NR is quite impressive. NR can be purchased from Thorne as NiaCell and is a proprietary formula developed and marketed by Chromadex. It is not cheap.

Important research is being done on Nicotinamide by collaborating groups in Switzerland and at Weill Cornell. A significant study was published in 2012.

I would be remiss not to mention all the information and discussions on mitochondria function in ME/CFS on Phoenix Rising and Healthrising. Just search for mitochondria and start reading. The internet is an amazing resource - and these sites are just great.

All these suggestions have to be approached carefully and are entirely dictated by trial and error. To me, strictures and dogmas are not particularly welcome. It is well known that each ME/CFS patient responds individually to any particular treatment. So one must work carefully. Taking things slowly, over weeks and months as opposed to days, is often helpful, setting the goal of building a long term framework. This is a one on one game. Incidentally this is not medical advice. I am not a doctor and I certainly do not want to be one, never did.

Here are the first and second page results of this Mito Profile:

The following is commentary by Dr. Myhill of the above page. "The result is made up of three elements. First of all it measures the rate at which ATP is recycled in cells. Because production of ATP is highly dependent on magnesium status, the first part studies this aspect. The second part measures the efficiency with which ATP is made from ADP. If this is abnormal it could be the result of magnesium deficiency and/or low levels of co-Q10 and/or low levels of NAD, and/or low levels of acetyl L-carnitine. The third possibility is that the protein which transports ATP and ADP across the mitochondrial membranes is impaired and that too is measured."